Dr. Jillian Horton pleads for care for vulnerable people like her late sister in life, as well as death

This First Person column is the experience of Jillian Horton, a Winnipeg physician and writer. Her first book, We Are All Perfectly Fine: A Memoir of Love, Medicine and Healing, is a national bestseller. For more information about CBC's First Person stories, please see this FAQ.

Last week, an obituary went viral, proving that even in the middle of a global pandemic, one life can still resonate.

When a reporter for the L.A. Times came across Eric Sydow's tender, measured tribute to his late sister Karen, he tweeted it out to his followers. Two days later, it had been viewed more than 10 million times.

Since then, it's been "liked" by more than a quarter of a million people.

That obituary resonated with me because I had a sister like Karen. And my years of being her sibling taught me a painful truth: the world is better at caring about people like Karen in death than in life.

My sister Wendy died in 2015, at the age of 52.

She was just six when her future was upended by a cancer that, over 50 years later, is still the deadliest among children.

Diagnosed with a malignant brain tumour, she had life-saving surgery but lost hearing, sight, the ability to walk and many other things she would never get back.

She liked to collect good china and could name every kind of dinosaur.- Jillian Horton

We travelled two different flight paths in life — mine full of ease and opportunity, hers characterized by complications and disaster.

My sister had plenty of wants and misgivings. She mourned the life she had lost, but she also dwelled in acceptance.

She brimmed with funny song lyrics, occasional rage and some harrowing curse words. She loved the Muppets and the Solid Gold Dancers. She was obsessed with the idea of raising the Titanic long before it was fashionable. She liked to collect good china and could name every kind of dinosaur.

She had the best sense of humour and absolutely perfect grammar. And like Karen, she too loved McDonald's.

But a fundamental truth about my sister's life is that she lived in a world that was designed to exclude her. 

A fight for inclusion

She grew up in an era where children with disabilities were segregated from so-called "normal" kids.

My parents fought for everything — from life-sustaining treatment when they were crudely told that she had "no brain left" to the right for Wendy to attend regular classes.

Later, they would crusade for adult housing and funding for the personal support workers who could provide her with the 24-hour care she needed to live. 

It was a decades-long ordeal, and all kinds of people stood in their way. I learned about ableism before it had a name. Whatever it was, I just knew it was everywhere. It still is.

Our siblings are beautiful and worthy of attention and love, not just in death, but in life.- Jillian Horton

Lately, I have been haunted by this thought: What if COVID-19 had happened while my sister was alive? Even post-vaccination, she would have been at an exceedingly high risk of illness and death from respiratory complications. 

I think of her small army of personal support workers — most of whom cared for her with tenderness and love.

What if any of them had refused to be vaccinated? What if they had declined to follow public health measures, insisting they were an infringement on their personal freedoms? What if my sister, who lived with less personal freedom than most of us could ever imagine, caught COVID-19 from one of the people whose job it was to care for her? 

My parents, who visited her every day in a house where they managed her care, could never have stayed away from her. If she'd acquired COVID-19, they would have gotten it too. I can't bear to imagine what would have happened next.

'Protect all the sisters like Karen'

COVID-19 has been especially hellish for people with disabilities and their loved ones — and perhaps the greatest mercy of my sister's difficult, truncated life is that the pandemic did not overlap with it.

People like my sister and Karen endure so much hardship, but most people do not consider the extent of their challenges or the many facets of their suffering.

When they die, they are sometimes reduced to platitudes about the afterlife and angels on earth. But even worse, when they die of COVID-19, they are often reduced to two words: "pre-existing condition."

I am glad Eric Sydow's tribute to his sister was able to cut through the noise and paint a picture of who she was. I hope he found solace in the attention.

I know something of his loss; I will miss my sister until I die.

And that's why, in this fragile and uncertain time, I just want to ask you to take steps to protect all the sisters like Karen. Families can't do it without your help. And our siblings are beautiful and worthy of attention and love — not just in death, but in life.